Development of PRO-PMs assessing symptoms following completion of curative-intent chemotherapy.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 171-171
Author(s):  
Katherine Eresian Chenok ◽  
Feifei Ye ◽  
Kristen K. McNiff Landrum ◽  
Emma Hoo ◽  
Valerie Kong ◽  
...  

171 Background: Few patient-reported outcome performance measures (PRO-PMs) have been validated for the cancer population. The testing that has occurred mostly focuses on advanced cancers despite the fact that the majority of people with cancer are diagnosed with earlier stage disease. We developed and tested PRO-PMs to assess quality of life, pain and fatigue in adult patients completing curative-intent chemotherapy for breast, colon and non-small cell lung cancers. Our goal is to develop measures that target symptoms that impact entry into the survivorship phase. Methods: We recruited 20 diverse test sites from the Michigan Oncology Quality Collaborative (MOQC) and the Alliance of Dedicated Cancer Centers (ADCC). Test sites enrolled patients, administered surveys, and collected clinical and demographic data. A Technical Expert Panel and the Patient and Caregiver Council selected PROMs and provided testing guidance. We assessed data collection feasibility and clinician/staff/patient burden throughout the testing process. Results: PROMIS instruments were selected due to psychometric testing in the target population, public availability and acceptability to patients and test sites. 1,753 patients were enrolled between 10/1/19 – 3/31/21. The COVID public health emergency disrupted testing and resulted in lower than expected enrolled patients/completed surveys; however, adaptations led to expansions in survey administration methods. Preliminary practice-level performance results from 10 sites show variation across sites for pain interference (mean = 50.5, SD = 2.8, with a range of 44.6—54.6) and fatigue (mean 49.2, SD = 2.8, with a range of 44.6--54.3). Some test sites reported PRO implementation to be burdensome; however, most patients evaluated did not find survey completion to be burdensome. Conclusions: Next steps include testing risk adjustment variables/model, creating adjusted performance scores, reliability and validity testing. Despite the consensus goal of PRO-PMs in oncology, barriers to implementation persist and important methodologic barriers exist (e.g., ability to achieve sufficient sample size in an oncology practice; defining the most appropriate numerator calculation that reports the desired quality concept and is appropriate for the PROM being used; analytic best practices for PRO-PM adjustment/testing). This project is contributing to the knowledge base as we seek to ensure that PRO-PMs provide meaningful, actionable, patient-centered quality data with benefits that outweigh the burden of implementation.

2021 ◽  
Vol 9 ◽  
Author(s):  
Mengli Xiao ◽  
Jiake Ying ◽  
Yingpan Zhao ◽  
Yang Zhao ◽  
Ying Liu ◽  
...  

Background: Functional dyspepsia (FD) is one of the most critical health problems worldwide. Although there has been an increased intervention to improve FD symptoms, it is difficult to compare the effect of intervention measures with the existing methods of reporting the outcome, and it is a lack of clinical evaluation tools that can be used to evaluate patients' symptoms and treatment. One way of potentially addressing this way is to offer a patient-reported symptom scoring scales, which can be self-reported by patients to highlight interventions' authenticity and reliability. Nevertheless, there is still a lack of validated patient-reported outcome instruments for post-prandial distress syndrome (PDS). This study aims to establish a symptom scoring scale to evaluate the effectiveness of interventions for PDS.Methods: The study consists of two steps. The first step was to formulate the scale. Through a systematic literature review and group discussion, an item pool and scale framework were formed. Then, through the expert consultation and pre-investigation, the formal version of the scale was formed. The second step is to test the reliability and validity of the scale. The scale is tested in the target population to determine whether the reliability and validity of the scale.Discussion: The improvement in patients' self-reported symptoms had a significant impact on the researchers' evaluation of the intervention's authenticity. Therefore, we develop a symptom scoring scale for reporting studies evaluating the effectiveness of PDS interventions. The scale will be used for a more significant comparison to evaluate PDS interventions' effectiveness. The scale also improves trial reporting, reducing research waste by prioritizing the collection and reporting of critical results for all relevant stakeholders.Clinical Trial Registration: ChiCTR, ChiCTR2100044489. Registered on March 22, 2021.


2021 ◽  
Vol 8 ◽  
pp. 237437352198925
Author(s):  
Amanda Robinson ◽  
Edith Pituskin ◽  
Colleen M Norris

A descriptive review was conducted to evaluate the evidence of cognitive patient-reported outcome measures (PROMs) following cardiac surgery. The search of electronic databases resulted in 400 unique manuscripts. Nine studies met the criteria to be part of the final review. Results of the review suggest that there are few validated PROMs that assess cognitive function in the cardiac surgical population. Furthermore, PROMs have not been used to assess overall cognitive function following cardiac surgery within the past decade. However, one domain of cognitive function—memory—was described, with up to half of patients reporting a decline postoperatively. Perceived changes in cognitive function may impact health-related quality of life and a patient’s overall view of the success of their surgery. Early identification of cognitive changes measured with PROMs may encourage earlier intervention and improve patient-centered care. In clinical practice, nurses may be in the best position to administer PROMs preoperatively and postoperatively.


2019 ◽  
Vol 4 (1) ◽  
pp. 8-15 ◽  
Author(s):  
Kathryn Yorkston ◽  
Carolyn Baylor

Patient-reported outcome measures contain information that comes directly from the patient without interpretation by anyone else. These measures are an important part of a clinicians' arsenal of assessment approaches and are critical in the development of patient-centered approaches to intervention. In this introduction to patient-reported outcome measurement tools, a history is provided of this approach to measurement and its place within the context of clinical research and practice. The process of instrument development and application will be reviewed, along with examples of measurement tools from the field of neurological communication disorders. This introduction is supplemented by references that provide interested readers with more detailed information.


2019 ◽  
Vol 29 (2) ◽  
pp. 122-128
Author(s):  
Fariba Tohidinezhad ◽  
Mohsen Aliakbarian ◽  
Ameen Abu-Hanna ◽  
Saeid Eslami

Introduction: Due to the high nonadherence rate to posttransplant regimen and medical indications among liver transplant recipients, systematic patient-centered interventions are needed to improve the medium- and long-term graft and patient survival outcomes. Objective: The aim of this study was to develop and test the psychometric properties of Liver Transplant Therapeutic Adherence Questionnaire. Design: A mixed-method instrument design was conducted in 3 phases: (1) initial item collection was generated by inductive content analysis on internationally available resources, (2) item screening was carried out by a 3-member committee and 25 domain experts including nurses and physicians aiming to establish content validity, and (3) data were collected from 247 liver transplant recipients in May 2016 for psychometric testing. Results: A total of 221 knowledge statements were extracted as potential adherence assessment items. The qualitative screening phase resulted in top 35 important items. The second screening phase was performed quantitatively by 25 experts (n = 14 nurses, n = 7 gastroenterologists and hepatologists, and n = 4 transplant surgeons). A total of 16 items were associated with statistically significant content validity ratio values (≥0.37) to be included in the final questionnaire. Exploratory factor analysis revealed a distinct 4-factor structure that was labeled as: daily activities (α = .93), immunization (α = .93), nutrition (α = .92), and major complications (α = .79). Discussion: Our results reveal evidence of acceptable reliability and validity for Liver Transplant Therapeutic Adherence Questionnaire. This instrument makes it possible to measure recipients’ therapeutic adherence in both domains of research and practice.


2007 ◽  
Vol 10 ◽  
pp. S94-S105 ◽  
Author(s):  
Marlene H. Frost ◽  
Bryce B. Reeve ◽  
Astra M. Liepa ◽  
Joseph W. Stauffer ◽  
Ron D. Hays

Author(s):  
Michael de Riesthal ◽  
Katherine B. Ross

In her seminal book on outcome measurement in the field of communication disorders, Carol Frattali (1998) set the path for outcomes research and clinical application in the field of speech-language pathology. In particular, she defined the many possible outcomes that can be measured to examine the influence of an intervention and the ways in which these measures can inform public policy. Of these, patient or client centered measures, which index outcome based on the patient's and family's or caregiver's perspective, have received increasing attention in recent research and clinical practice. These measures examine a variety of patient reported outcomes (PRO) associated with health. PRO measures are being used more commonly in clinical practice and as end points in medical and rehabilitation outcomes research. This perspective reflects the shift in medicine and rehabilitation toward patient-centered care. In this article, we will examine the rationale for using PRO measures, the advantages and challenges for using these tools, and current use of PRO measures in neurological communication disorders.


2012 ◽  
Vol 10 (1) ◽  
pp. 64 ◽  
Author(s):  
Gwerfyl Roberts ◽  
Seren Roberts ◽  
Richard Tranter ◽  
Rhiannon Whitaker ◽  
Emma Bedson ◽  
...  

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